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Treatment Adherence in Adolescents PDF
Treatment Adherence in Adolescents PDF
RICHARD J. SHAW
Stanford University, USA
A B S T R AC T
The failure of the adolescent medical patient to adhere to prescribed medical treat-
ment is one of the major reasons for psychiatric consultation in pediatric medical
settings. This article reviews the developmental issues that interfere with treatment
adherence in adolescents with chronic physical illness as well as the importance of
co-morbid psychiatric disorders. Incomplete adherence is conceptualized as a clini-
cal phenomenon that can be understood by considering both developmental and
psychopathological factors that influence health care behavior. Interventions
designed to enhance treatment adherence need to consider both developmental
issues and psychiatric co-morbidity in order to improve outcome.
K E Y WO R D S
adolescence, psychiatric co-morbidity, treatment adherence
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phenomena, rather than the categorical approach of classifying patients as either adher-
ent or nonadherent (La Greca & Schuman, 1995; Lask, 1994). It is also helpful to
consider different dimensions of the treatment regimen, for example, patients with cystic
fibrosis may have different rates of adherence depending on whether the treatment issue
is that of medication, diet or physiotherapy (Abbott, Dodd, Bilton, & Webb, 1994).
Rates of treatment adherence vary widely depending on the medical condition, the
nature of the treatment prescribed, as well as the criteria used to define adherence (La
Greca, 1990a). It is a common issue not only for more benign acute medical conditions,
but also for patients in whom poor adherence to treatment may have life-threatening
consequences, for example, heart and heart–lung recipients (Serrano-Ikkos, Lask,
Whitehead, & Eisler, 1998). Studies of children with chronic physical illnesses, reviewed
by Rapoff (1999), suggest that rates of nonadherence vary between 4 and 90%, while
Litt and Cuskey (1980) estimate that the overall rate of nonadherence in this population
is closer to 50%.
There are numerous important consequences related to poor treatment adherence
(Rapoff, 1999). Studies have shown a relationship between rates of treatment adherence
and morbidity in several diseases, including asthma, diabetes, infectious diseases and
renal transplant recipients (Bloom & Murray, 1992; Ettenger et al., 1991; Goldring,
James, & Anderson, 1993). This increased morbidity is associated with higher health care
costs, and may result in increased burden to the families related to the need for increased
frequency of hospitalizations and medical appointments. Berg, Dischler, Wagner, Raia,
and Palmer-Shelvin (1993) have estimated the cost of incomplete treatment adherence
to the US health care system as close to $100 billion each year. There is also significant
mortality related to treatment adherence. Cooper, Lanza, and Barnard (1984), for
example, reported that up to 26% of deaths in a series of heart transplant recipients were
directly related to incomplete treatment adherence. In addition, there are important
ethical considerations related to the allocation of organs to transplant recipients who
have a prior history of poor treatment adherence. Increasingly, insurance companies are
likely to focus attention on these issues as efforts to contain costs run up against
consumer demands for expensive, high-tech medical interventions.
Separation–individuation
Numerous authors have drawn attention to the adolescent developmental task of separ-
ation–individuation (Blos, 1967). It is one of the core issues for adolescents and one that
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often results in conflict within the parent–child relationship. Although there has been
little empirical study of this issue in children with chronic illness, clinical observations
suggest that adolescents may act out conflicts related to the separation–individuation
process by either overt or covert refusal to adhere to medication or other prescribed
treatments (Hamburg & Wortman, 1996/97; La Greca, 1990a; La Greca & Schuman,
1995).
Influence of illness on development The need to take medication or follow dietary, exer-
cise or other treatment recommendations generally does not sit well with the
adolescent’s increasing desire for autonomy. In addition to creating a dependency on
doctors and medical treatment, chronic illness is a constant reminder of the presence of
disease and of being ill. Illness or the side-effects of treatment may lead to delays in
physical development or in some cases serious limitations on physical activity. This may
interfere with participation in age-appropriate physical activities, or result in excessive
dependency on parents or care givers. With older adolescents and young adults, chronic
debilitating illnesses may result in very real impediments to independent living, result-
ing from their inability to work, financial constraints and the need to maintain coverage
for medical insurance. In addition, small stature or delayed puberty may result in adoles-
cents appearing younger than their chronological age leading others to underestimate
their cognitive or social capacity, potentially exacerbating the potential for parent–child
conflict.
Influence of illness on caretakers Chronic physical illness is often associated with a number
of different reactions on the part of the parents that may be relevant in terms of their
potential to impact the separation–individuation process. Illnesses with a genetic
component, such as cystic fibrosis, make provoke feelings of excessive guilt, sometimes
referred to as genetic guilt (Taylor & Eminson, 1994). Attempts to compensate for these
feelings may lead parents to feel uncertain about setting appropriate limits on adolescent
behaviors, which may encourage acting out behaviors, including those of the failure to
adhere to treatment. In addition, there is increasing recognition of the incidence of symp-
toms of post-traumatic stress disorder (PTSD) as shown in studies of parents of children
diagnosed with leukemia and asthma (Stuber, Christakis, Houskamp, & Kazak, 1996;
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Wamboldt, Weintraub, Krafchick, Berce, & Wamboldt, 1995). Reference has also been
made to the Damocles syndrome, describing the hypervigilance and anxiety of parents
who face the persistent threat of losing their child to illness (Koocher & O’Malley, 1981).
The parents’ desire to protect their child may also interfere with their willingness to allow
their children to participate in age-appropriate, yet potentially risky, physical activities,
for example, in the case of children with hemophilia who are at risk of bleeding from
trauma. This anxiety can foster a pattern of over-control and enmeshment that may
further interfere with the adolescent’s need to separate and individuate from the parents
(Reynolds & Garralda, 1988).
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Adolescent omnipotence One of the common beliefs of adolescents is that they are
somehow invulnerable to the potential negative consequences of high-risk behavior. It
is one of the commonly observed phenomena in adolescence described by Elkind (1967).
This observation has led to speculation that poor adherence to medical treatment may
be based, in part, on the adolescent belief that they can get away with not adhering to
prescribed treatment (Harris & Linn, 1985). Elkind’s (1967) concept of egocentrism
suggests that adolescents’ belief that they are invulnerable is so strong that it ‘becomes
a conviction that he will not die, that death will happen to others, but not to him’, which
in physical illness may include the known risks of incomplete adherence.
Hauser’s theory of ego development Support for the concept of adolescent omnipotence
is fund in Hauser’s (1991) theory of ego development. In his conceptualization of
adolescent development, Hauser defines a sequence of increasingly mature stages of
functioning in several domains that include impulse control and cognitive style. Accord-
ing to this theory, ego development involves the greater ability to anticipate the conse-
quences of behavior as well as the ability to take increased personal responsibility for
one’s actions. Hauser described six stages of ego development in which the overall
progression is towards greater social conformity. During the impulsive stage, the early
adolescent tends to be impulsive and present-focused with little ability to accept the need
to conform to rules related to medical treatment or consider the possibility of potentially
negative future consequences. This is particularly true in diseases in which there are no
immediate visible consequences of missing doses of medications (Litt & Cuskey, 1980).
It is not until late adolescence, during Hauser’s conscientious stage, that responsibility
for treatment can be appropriately delegated to the adolescent, and even at this stage,
some ongoing adult supervision is likely to be necessary.
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and the establishment of relationships outside the family (Ponton, 1997). There is a
spectrum of risk-taking behaviors from benign, age-appropriate activities to high-risk
behaviors, that include substance abuse, reckless driving and unprotected sexual
activity. Incomplete adherence to certain aspects of the medical regimen has been
conceptualized as part of this spectrum of risk-taking behaviors in those adolescents
with chronic medical illness (Shaw, 1998). Although health care professionals may have
the goal of consistent and full adherence to their treatment recommendations, the
reality is that adolescents and their families are constantly trying to balance needs for
health care with those for a normal life. In many cases, health care professionals may
not fully understand the implications of what full adherence to their prescribed treat-
ments entails. In fact, in their efforts to maintain a semblance of age-appropriate,
normal behavior and psychological functioning, families often make ‘quality of life’
decisions about how closely to follow treatment recommendations. Deaton (1995), in a
study of asthmatic patients, has used the term ‘adaptive non-compliance’ to describe
this phenomenon. Koocher, McGrath, and Gudas (1990) in their typology of non-
adherence in patients with cystic fibrosis use the term ‘educated non-adherence’. In
continuing the analogy of incomplete adherence as a risk-taking behavior, it may be
helpful to differentiate adaptive incomplete adherence as a form of normal adolescent
risk-taking behavior that promotes adolescent individuation and development. In
contrast, risk behaviors are patterns of risk-taking that have predominantly negative
consequences (Ponton, 1997). Irwin (1989) has similarly argued that adolescents need
to distinguish between behaviors that are enhancing and those that present not only no
gains, but also a significant risk of danger.
While many health care professionals may struggle with this concept, it is helpful to
consider the issue of the relationship between treatment adherence and medical
outcome. It is important to emphasize that full adherence is not synonymous with good
medical outcome and that there are huge individual variations in disease outcome. In
diabetes, for example, most studies have shown either no relationship, or only weak
correlations between treatment adherence and glycemic control (Johnson, 1995).
Psychiatric co-morbidity
I have reviewed some of the common developmental issues that may be influential in
promoting poor treatment adherence in normal adolescents. However, there is a group
of adolescents who engage in a spectrum of risk-taking behaviors, which includes
incomplete treatment adherence, but whose behavior may be an expression of much
more serious underlying psychopathology. In fact, several studies have shown that
patients with emotional and behavioral difficulties are more likely to have poor treat-
ment adherence (Brownbridge & Fielding, 1994; Jacobson et al., 1987; Korsch et al.,
1978; Kovacs et al., 1992). It is important to differentiate the group of patients with
severe psychiatric co-morbidity, as these patients may require more intensive psycho-
logical interventions.
Depression
The presence of a mood disorder may directly interfere with treatment adherence.
Studies of patients on renal dialysis have suggested an association between adherence
and both co-morbid diagnoses of depression (Brownbridge & Fielding, 1994) and suici-
dal behavior (Abram, Gorden, Moore, & Westervelt, 1971). Feelings of low self-esteem
have been shown to be correlated with poor treatment adherence in renal transplant
recipients (Korsch et al., 1978). In more extreme cases in which a terminal illness is
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progressing, patients may make deliberate decisions to refuse treatment believing that
the costs of treatment outweigh the potential benefits. Specifically, greater pessimism has
been associated with nonadherence in patients with cystic fibrosis (Gudas, Koocher, &
Wyplj, 1991).
Personality pathology
The presence of personality pathology may also interfere with the ability of patients to
follow treatment recommendations. Stoudemire and Thompson (1993) in a study of
borderline adult patients noted that these patients had difficulties trusting their phys-
icians, and that their impulsiveness and self-destructive behavior interfered with their
cooperation with medical treatment. Patients who engage in self-defeating patterns of
behavior may also undermine and sabotage treatment interventions. Elliot (1987) has
also reviewed some of the mechanisms by which patients with somatic illness use self-
defeating behavior to resist their physicians (Table 2). These patients seem to be uncon-
sciously motivated to create despair in the medical provider who in return is prone to
collude with the despair, or become actively involved by being harsh, critical or verbally
sadistic towards the patient. There is particular frustration at the apparent lack of inter-
est in the patient in changing their behavior and preventing the inevitable deterioration
in their health status. Lipsitt (1970) has also suggested that this group of patients may
unconsciously be requesting caring rather than a cure for their illness.
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Parent–child conflict
Many studies have shown that family function is a crucial component of adaptation to
chronic illness (Lorenz & Wysocki, 1991). Numerous studies have shown a direct
relationship between family conflict and poor treatment adherence (Christiaanse,
Lavigne, & Lerner, 1989; Friedman et al., 1986; Hauser et al., 1990). Conflict between
family members has also been shown to be associated with poor medical outcome in
studies of diabetic patients (Anderson, Miller, Auslander, & Santiago, 1981; Marteau,
Bloch, & Baum, 1987; Wysocki et al., 1995). Although some degree of parent–adolescent
conflict is to be expected, families with excessive levels of conflict are at particular risk
because the support of the parents is critical to ensure adequate treatment adherence,
particularly in younger adolescents.
Cognitive limitations
The presence of cognitive limitations is clearly an important factor that can influence the
patient’s ability to understand and accurately appraise the need for treatment, resulting
in the failure to follow treatment recommendations. Cognitive limitations may be
assessed not only based on the child’s level of cognitive maturity, but also those related
to the consequences of both disease and treatment on cognition. Many of the chronic
illnesses, for example, renal and liver failure, may affect cognitive and academic func-
tioning, either as a direct result of the illness, or indirectly by resulting in missed school
days due to hospitalizations and the need to attend medical appointments (Schweitzer
& Hobbs, 1995). In addition, many of the medications used to treat chronic medical
conditions, for example, anticonvulsant medications used in seizure disorders, can impair
cognitive functioning (DuPaul & Kyle, 1995). It is also important to assess parental
knowledge and problem-solving skills, because it is usually the responsibility of parents
and families to monitor treatment, especially in younger children. La Greca et al. (1990)
emphasize the importance of this point in their finding that preadolescent, but not
adolescent, treatment adherence was correlated with maternal knowledge in diabetic
patients.
Treatment implications
Developing an effective treatment approach to manage treatment adherence remains
one of the most challenging issues for the medical team. In this article, I argue that it is
important to differentiate incomplete treatment adherence that may be a normative
adolescent risk-taking behavior from the more serious subtype of nonadherence that is
motivated by underlying psychiatric illness. I suggest that ‘normative incomplete adher-
ence’ be anticipated in all adolescents with chronic physical illness, but may be addressed
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with fairly simple preventative interventions based on educational and behavioral prin-
ciples. I differentiate poor adherence occurring in patients with underlying psychiatric
co-morbidity and suggest that this subgroup may require more intensive individualized
psychiatric interventions in addition to the basic educational and behavioral inter-
ventions.
Despite extensive research on the prevalence and correlates of treatment adherence
in children with chronic physical illness, there have been remarkably few empirical
studies of interventions to enhance treatment adherence. La Greca and Schuman (1995)
and Rapoff (1999) have reviewed the major categories of treatment interventions used
to enhance treatment adherence (Table 3). Educational interventions have been found
to be useful when patients are first diagnosed, or when the goal is to help adolescents
take on an increased level of responsibility, although when used alone they have limited
impact on improving adherence in chronic illness (La Greca & Skyler, 1991). Strategies
that rely on organizational changes, for example, simplification of the treatment regimen,
and those that rely on increased levels of medical supervision have also been found to
be successful (Eney & Goldstein, 1976; Rapoff, Purviance, & Lindsley, 1988). Treatment
interventions that integrate behavioral approaches, including the use of incentives or
other positive reinforcement strategies, have, in general, been shown to be more effec-
tive than simple educational programs (Padgett, Mumford, Hynes, & Carter, 1988;
Rapoff et al., 1988). However, preliminary findings suggest that most success has been
associated with programs that combine treatment strategies such as intensive education,
parental involvement, self-monitoring and reinforcement procedures. La Greca and
Schuman (1995) have suggested the need to combine intervention strategies, and import-
antly, to look at specific child and family characteristics that may influence the patient’s
ability to respond to interventions.
One other important principle is that treatment interventions need to target the
family. Parents generally have the primary responsibility for ensuring good treatment
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adherence, especially in younger adolescents (La Greca et al., 1990). Interventions that
aim to increase the level of parental involvement have been found to be successful in
improving rates of adherence (Anderson, Wolf, Burkhart, Cornell, & Bacon, 1989; Satin,
La Greca, Zigo, & Skyler, 1989). In addition, as reviewed earlier, there have been numer-
ous studies showing a clear relationship between adherence and family functioning,
which include conflict, communication style, and most importantly, parental support
(Wysocki et al., 1995).
Finally, it is critical to screen adolescents and families for psychiatric co-morbidity, as
the presence of a co-morbid psychiatric disorder is highly likely to be associated with
poor adherence. To date, there have been virtually no studies that have examined the
effect of co-morbidity on response to interventions designed to improve adherence (La
Greca & Schuman, 1995). Wysocki et al. (2000) have conducted one of the first random-
ized controlled studies on poor adherence in adolescents with diabetes using an inter-
vention based on the model of Robin and Foster (1989) in which the primary target for
intervention was parent–adolescent conflict. Quittner et al. (2000) are currently testing
a similar intervention for adolescents with cystic fibrosis. Rapoff (1999) has advocated
the importance of developing and validating manualized treatment interventions that
can then be applied in different population groups. When psychiatric co-morbidity is
identified, treatments need to be individualized to address specific illnesses, whether it
be the diagnosis of major depression, ADHD, or severe parent–adolescent conflict.
When these important underlying co-morbid disorders have been adequately treated,
patients may become candidates for less intensive intervention programs that are
targeted specifically at enhancing treatment adherence. The development of clinical
pathways may be useful in determining the intensity of the treatment required for
specific patients. This approach is also likely to have important cost benefits if screening
of patients results in patients being assigned to appropriate levels of treatment inter-
vention.
Note
An earlier version of this article was presented at the 45th Annual Meeting of the American
Academy of Child and Adolescent Psychiatry, October 1998, in Anaheim, California.
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